Monday, March 5, 2012

Five years

Just a heads up that it's now been five years since I started LDN. After it stopped my illness progression and I regained a lot of lost functionality my life took a turn for the better. In the last few years I've got married, moved abroad and had four books published, including a novel. One by one my dreams have come true.

I'm now being tested to see if I have Lyme disease (I've had some antibody tests in Finland, but nothing reliable), I should have the results next week. If the results are positive, I'll try to post here at some point. If I did turn out to have Lyme as well as CFS/ME, it would be good news for people with Lyme I guess, since usually it's thought LDN isn't as helpful for Lyme as it is for CFS/ME.

P.S. I was supposed to post this already last year, but please avoid the International Biomedical Center at Leende (places with the same name in other Dutch cities are fine). Yes, they do prescribe LDN if they feel like it, but they also lie to their patients and their lies really endangered my health in the spring of last year.

2 comments:

I have just started on LDN myself, and in researching it happened to read your last post. I also became severely ill around the time you did, was first diagnosed with CFS/FM, and then was finally diagnosed five years ago with the probable cause: Lyme and co-infections. I am currently not doing nearly as well as you are, but it gives me hope to read about people who are getting better! In any case, I just wanted to make sure that you realise that there are NO absolutely reliable tests for Lyme disease, and some people are simply seronegative despite infection. A good doctor will make the diagnosis clinically. After numerous negative antibody tests over the years my CFS doctor in the Netherlands finally did a PCR test which luckily came back positive in 2007. I am very curious to hear if you will turn out to have Lyme disease as well. I am currently living in Austria, but managed to find a few good doctors in The Netherlands while I was there (for CFS, Lyme, and GP). Let me know if you'd like their contact details.Good luck with continuing to get better!

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Author

I'm a 26-year old woman who has been struggling with (originally progressive) chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME since 2000. I have authored a medical book about the treatments of CFS/ME, titled Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia. I have also been a speaker at two LDN conferences, in Glasgow and Birmingham in 2010. I am originally from Finland, but currently reside in the Netherlands.
The aim of this blog is to share my experience of what low dose naltrexone actually does (or can do) for a person with CFS/ME. It is mostly inactive now, as there isn't much else to share about the topic.